a rabble-rouser

a muddled mammogram mess

Edited to add: Thanks to all the people on Twitter who think they are my oncologist. (Sarcasm intended). I understand that the guidelines are for screening mammograms, not diagnostic ones. My point is that even though I presented with a ‘symptom’, I only went for a diagnostic mammogram and ultrasound (that eventually found my cancer) AFTER I presented to my doctor and asked to be referred. If I had a doctor that dismissed me, or who didn’t believe me, I would have been sent away. I was LUCKY to have the doctor that I had and I am LUCKY that I am able to advocate for myself with my boatload of privilege. Breast cancer diagnoses should not be left up to LUCK. Ps: This is my story and I own it.

There are new guidelines in Canada from the Canadian Task Force of Preventative Health Care about breast-cancer screening. These ones place the responsibility to be screened on the shoulders (breasts?) of women.

“…women should decide for themselves, with guidance from their health-care provider, whether to get screened.” –Carly Weeks, Globe + Mail

As a woman who has had breast cancer, I feel deeply conflicted about this approach.

I found what I termed a ‘ridge’ in my left breast one night laying in bed watching television. It was directly over my heart and it did not go away over the next several weeks. I reluctantly made an appointment with my family doctor to see what she thought.

“It might be hormonal,” she said. “But if you are concerned about it, I can refer you for a mammogram.”

I had no history of breast cancer in my family and I was two years away from being sent for a regular mammogram at age 50, so I said yes. So began the agony that is breast cancer diagnostics, diagnosis, treatment, aftermath and collateral damage that has consumed me for the past two years.

My breast cancer was early stage and I ended up with a lumpectomy and 20 days of radiation treatment. The tumour was hidden deep in my breast, right against my chest wall.

If I had not gone for a mammogram and then subsequent ultrasound, would the tumour – which was slow-growing and lazy – have killed me? Was I over-diagnosed? I will never know.

All this talk in the media about over-diagnosis makes me think: should I have left well enough alone and not even mentioned my concern to my doctor? On one hand, not going for that initial mammogram would have saved me a great amount of suffering. On the other hand, I DID have cancer. Would it have come back with a vengeance a few years later?

The Task Force summary says this:Screening leads to overdiagnosis resulting in unnecessary treatment of cancer that would not have caused harm in a woman’s lifetime, as well as physical and psychological consequences from false positives. Women less than 50 years of age are at greater risk of these harms than older women.

While I whole-heartedly agree about the physical and psychological harm, I do question the ‘unnecessary treatment’ part. How do we know that my tumour would have eventual killed me? Answer: we do not know if my cancer would have or would have not caused me harm in my lifetime. There is no diagnostic test or pathology that has been developed to tell me that for sure.

Once the pathology came back as malignant, I was thrown on the roller-coaster that is breast cancer treatment. I could not not be treated once the word cancer was uttered –for the sake of my children, my husband and me. This is not a diagnosis that can be ignored.

I am grateful that my family doctor listened to me when I showed up with a concern. However, I do know that not all doctors listen to women. If it is up to us to advocate for our own mammogram screening, how many women will be dismissed? While the shared decision-making model between patients and physicians mentioned in the report is a great best practice, how much does shared decision-making really happen in real life? How many ominous tumours will not be found until they are much bigger and more deadly than mine was if women are not taken seriously and heard?

This report dismisses ultrasounds for women with dense breasts, which is a real thing. (My mass was detected by a subsequent ultrasound after my mammogram). It seems focused solely on saving money by displacing the responsibility for making the decision about the screening on the patient.

Let’s face it, mammograms aren’t fun. If you don’t have a good technician, this adds to the discomfort and pain. But having breast cancer ain’t fun either, especially if it is detected in late stages. I don’t mean to fear monger, but breast cancer can kill you.

This only adds to the confusion I already have about screening for breast cancer. My one last question about it: were women who have the lived expertise of having had breast cancer represented on the Canadian Task Force on Preventive Health Care that made this decision? Cynical me thinks not.

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2 thoughts on “a muddled mammogram mess”

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I’m a mammogram avoider. Had my last screening in 2013. In 2017 I woke up with a sore armpit and thought that was weird. Still hurt the next day so made a dr appointment. My mammogram 2 weeks later was exactly the same as my 2013 one. The report says “grossly unremarkable”. Also was booked for an ultrasound same day which showed I had a large tumour and my lymph nodes were involved. My dense breast tissue hid my tumour in the mammogram, and yet I needed the mammogram to show I had dense breasts. Wish we’d found it small. I’m finished treatment as far as I know. Chemo, surgery, and radiation. It was no picnic.